The club no one wants to join

Two mothers who lost children to the same disease share an emotional bond few can forge

Updated 10:25 am, Friday, January 18, 2013

Erin Musto of Rotterdam, left, and Laurel McAdoo of Bethlehem became friends after the two mothers each lost children to the same disease. They bonded by their past and the foundations they've found that help families in the situations they were in. The pair are pictured in the Bethlehem YMCA Tuesday, Jan. 15, 2013, in Bethlehem, N.Y., where they met. (Michael P. Farrell/Times Union)

Erin Musto of Rotterdam, left, and Laurel McAdoo of Bethlehem...

Laurel McAdoo of Bethlehem, left, and Erin Musto of Rotterdam, right, and became friends after the two mothers each lost children to the same disease. They bonded by their past and the foundations they've found that help families in the situations they were in. The pair are pictured in the Bethlehem YMCA Tuesday, Jan. 15, 2013, in Bethlehem, N.Y., where they met. (Michael P. Farrell/Times Union)

Laurel McAdoo of Bethlehem, left, and Erin Musto of Rotterdam,...

Erin Musto of Rotterdam, left, and Laurel McAdoo of Bethlehem became friends after the two mothers each lost children to the same disease. They bonded by their past and the foundations they've found that help families in the situations they were in. The pair are pictured in the Bethlehem YMCA Tuesday, Jan. 15, 2013, in Bethlehem, N.Y., where they met. (Michael P. Farrell/Times Union)

Erin Musto of Rotterdam, left, and Laurel McAdoo of Bethlehem...

Myles McAdoo, left, and his twin brother Marcelle at a radiothon earlier this year. Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Laurel McAdoo)

Myles McAdoo, left, and his twin brother Marcelle at a radiothon...

Myles and Marcelle McAdoo were declared honorary Delmar firefighters. Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Laurel McAdoo)

Myles and Marcelle McAdoo were declared honorary Delmar...

Myles McAdoo, in the front passenger seat, on the last day of school in June. His brother Marcelle is sitting up in the back. Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Laurel McAdoo)

Myles McAdoo, in the front passenger seat, on the last day of...

Myles and Marcelle McAdoo are honorary Delmar firefighters. Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Laurel McAdoo)

Myles and Marcelle McAdoo are honorary Delmar firefighters. Myles...

Myles McAdoo, in the front passenger seat, gets a ride to cheers in front of Hamagrael Elementary School on the last da of classes. Others include his friend Hayden Fisher (back left), and his brother Marcelle(sitting up, back). Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Laurel McAdoo)

Myles McAdoo, in the front passenger seat, gets a ride to cheers in...

Myles McAdoo Jet Skiing in Coeymans. Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Laurel McAdoo)

Myles McAdoo Jet Skiing in Coeymans. Myles McAdoo died Tuesday,...

Myles McAdoo at Great Escape. Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Laurel McAdoo)

Myles McAdoo at Great Escape. Myles McAdoo died Tuesday, July 24,...

With a friend at Ripley's Museum in New York City. Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Laurel McAdoo)

With a friend at Ripley's Museum in New York City. Myles McAdoo...

Myles McAdoo (left) with his brother Marcelle (front, right), half-brother Decovan (far right) and friends in New York City. Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Laurel McAdoo)

Myles McAdoo (left) with his brother Marcelle (front, right),...

Myles McAdoo in Myrtle Beach, S.C. Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Laurel McAdoo)

Myles McAdoo in Myrtle Beach, S.C. Myles McAdoo died Tuesday, July...

Myles, Marcelle and Laurel McAdoo in Myrtle Beach, S.C. Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Laurel McAdoo)

Myles, Marcelle and Laurel McAdoo in Myrtle Beach, S.C. Myles...

Marcelle McAdoo pretends to drive mom's rented Mustang in Myrtle Beach, S.C. His brother Myles sleeps in the passenger seat. As his illness wore on fatigue became a bigger factor. Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Laurel McAdoo)

Marcelle McAdoo pretends to drive mom's rented Mustang in Myrtle...

Myles McAdoo at the New England Aquarium in Boston. Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Laurel McAdoo)

Myles McAdoo at the New England Aquarium in Boston. Myles McAdoo...

Marcelle and Myles McAdoo with friend Hayden Fisher (l. to. r) at Universal in Orlando, Fla. Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Laurel McAdoo)

Marcelle and Myles McAdoo with friend Hayden Fisher (l. to. r) at...

Myles McAdoo pets a sloth at Discovery Cove in Orlando, Fla. Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Laurel McAdoo)

Myles McAdoo pets a sloth at Discovery Cove in Orlando, Fla. Myles...

Myles McAdoo with friend Quinn Fisher in Orlando. Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Laurel McAdoo)

Myles McAdoo at Proctors Theatre before seeing "Beauty and the Beast." Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Laurel McAdoo)

Laurel McAdoo and her son, Myles McAdoo. Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Niki Rossi Photography)

Myles and Marcelle McAdoo. Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Nikki Rossi Photography)

A reproduced image of Maddie Musto May 25, 2012, courtesy of her mother Erin Musto. Erin Musto of Schenectady, N.Y. has started an organization to help mothers and families like hers who have lost children to an incurable disease. (Skip Dickstein / Times Union)

A reproduced image of Maddie Musto May 25, 2012, courtesy of her...

The Musto family from Rotterdam, background, Matthew, his wife Erin and their two daughters, Amelia and Lucy receive a medal from Victoria Adler, executive director of the Lions Eye Bank at Albany at the Reflections of Love, Donor Memorial Service at the Desmond Hotel on Sunday, Sept. 30, 2012 in Colonie, NY. The family was there to honor their oldest daughter, Madeline, 5, who died in February. The service was put on by the Sight Society of Northeastern New York and the Lion's Bank at Albany and was held to pay tribute to those who have given the gift of life and sight through organ donation. (Paul Buckowski / Times Union)

The Musto family from Rotterdam, background, Matthew, his wife Erin...

Erin Musto enjoys a moment with her two remaining children Lucy, left and Ameila at their home in Schenectady, N.Y. May 25, 2012. Erin Musto has started an organization to help mothers and families like hers who have lost children to an incurable disease. (Skip Dickstein / Times Union)

Erin Musto enjoys a moment with her two remaining children Lucy,...

Laurel McAdoo and her son, Myles McAdoo. Myles McAdoo died Tuesday, July 24, 2012 after a recurrence of brain cancer, six months after the diagnosis. In that time in between he lived a full life. (Niki Rossi Photography)

Erin Musto displays brochures from her organization named for her deceased daughter Maddie at their home in Schenectady, N.Y. May 25, 2012. Erin Musto has started an organization to help mothers and families like hers who have lost children to an incurable disease. (Skip Dickstein / Times Union)

Erin Musto displays brochures from her organization named for her...

Erin Musto of Rotterdam, left, and Laurel McAdoo of Bethlehem became friends after the two mothers each lost children to the same disease. They bonded by their past and the foundations they've found that help families in the situations they were in. The pair are pictured in the Bethlehem YMCA Tuesday, Jan. 15, 2013, in Bethlehem, N.Y., where they met. (Michael P. Farrell/Times Union)

"It's the club we found ourselves members of," McAdoo said, "that we never wanted to join."

They are different, very different. Under normal circumstances, their paths would never have crossed.

McAdoo is a 47-year-old black single mom, a human resources associate from Bethlehem and the mother of three boys.

Musto is white, a 30-year-old married stay-at-home mom from Rotterdam who has three girls.

McAdoo and Musto are grateful that they have each other. They found that they are the same, very much the same.

They have trouble sleeping, and battling dark days. And they hate The Face, the "Oh, poor you" looks they often get.

"Both of us don't like The Face," McAdoo said.

They understand the discomfort from the good intentions that come up short. Most other people, thankfully, don't share their experience.

When you lose young children to the same disease in the same year — Madeline Musto, 5, and Myles McAdoo, 9, died of brain tumors in 2012 — and try to cope with that loss, and start foundations that honor those kids' memories while helping families going through health crises like yours did, a bond is created that few can forge.

"You share some kind of screwed-up history that binds you," McAdoo said. "We've just been, I don't know if a source of strength for each other, but it's nice to know that somebody gets your (brand of) crazy. She absolutely gets it."

Musto, in a separate interview, expressed many of the same thoughts in describing McAdoo, sometimes down to the same words such as "she gets it" and "It's an exclusive club."

"We share a lot of the same personality," Musto said. "One, it's been helpful to have a person honor their child and help families the way they were helped. And, two, she's someone who thinks I am normal."

They also acknowledge there's nothing normal about losing a young child.

Both have started foundations — Maddie's Mark and Myles of Smyles — to help families mired in medical crises. The Myles of Smyles Foundation will host its first event on Feb. 9, a benefit concert and silent auction for the family of Zach Swart, a Saugerties 11-year-old who is battling leukemia for the second time. A tribute also will be paid to Maddie's Mark; the event takes place a day after the one-year anniversary of Maddie Musto's death.

"I don't want Myles of Smyles to be a one-hit wonder," McAdoo said. "I want it to be his legacy."

Adds Musto of Maddie's Mark: "This foundation is my forever."

Musto met McAdoo last year through the YMCA Circle of Champs program, which seeks to improve the lives of Capital Region kids facing life-threatening illnesses. By then Maddie was gone and Myles was fading. Musto later asked McAdoo if there was anything she could do for her. The Bethlehem woman said her son needed a recliner, since breathing and sleeping in bed were difficult.

A recliner soon arrived at the McAdoo home. It's where Myles McAdoo spent his final hours.

"That was the chair he passed in," Laurel McAdoo said. "That is the chair that (Myles' twin brother) Marcelle curls up in every single day. And when he's not in it, I'm in it."

The two meet for lunch every other week or so, and at meetings. They talk and text, at all hours. They check on each other at holidays. Conversation, even difficult conversation, comes easily. There's no wariness, no fear of being judged no matter how unfounded, no concerns that the other will say something well-meaning but grating.

Nancy Donnelly, the mother of Zach Swart, understands the bond. She started working with McAdoo a few years ago during Zach's first bout with leukemia when the Saugerties woman primarily penned "Lyrics From the Heart," an inspirational music CD for kids who are fighting illness and their families. It has been distributed to hospitals throughout the country. Unlike McAdoo and Musto, Donnelly has not lost a child. But Donnelly said all three women understand the fear, the drive, the need to stay strong and the fact some days it's just too hard.

"There are things you don't have to say, you don't have to explain," Donnelly said. "It is a fraternity."

The women say their philanthropic efforts grew out of their desire to help others. Having to keep moving, always moving, is also a motivator.

"It kind of forces me to do things," Musto said. "There are expectations. It forces me to move when I don't always want to."

"Not everybody gets out of bed and functions when this happens," Musto said. "With the foundation, when we're helping the family, all of a sudden, three weeks go by."

Musto lets grief wash over her, if only for a day.

"I like the days it hurts a lot," Musto continued. "Some days it feels like you're forgetting. There is a huge sense of numb. ... When I have a lot of good days in a row, I feel like I'm suppressing them. Believe me, it's not easy to get up sometimes. (But) I like my bad days."

McAdoo said she handles her bad days differently. "She powers through. She likes to feel the level of intensity," she said of Musto. "I don't think I could ever crawl out. I let (grief) out in a burst, then I shut it down, because if I don't I'm never going to stop."